General E-Newsletter

Paul Marchand, Self-Proclaimed “Lifer” to Retire

Paul Marchand, long time Director of the Governmental Affairs Office, is retiring in January after a 38-year career with The Arc.

This year’s Convention closing dinner will celebrate Paul and all he has accomplished during his time with The Arc. Register now to celebrate with Paul.

Paul, a self-proclaimed “lifer” in the intellectual and developmental disability movement, played an instrumental role in most of our national disability policy, including the right to a free public education, supported employment, and disability rights laws including the Americans with Disabilities Act. This year’s Convention closing dinner will celebrate Paul and all he has accomplished during his time with The Arc.

A strong believer in collaborations and coalitions, Paul served for twenty five consecutive years as the Chairman of the Consortium for Citizens with Disabilities (CCD). CCD has grown for a handful of national disability organizations to over 110 organizations. CCD is a powerful voice in our nation’s capital. He also helped create and has directed The Arc and United Cerebral Palsy Disability Policy Collaboration for the past eight years. He is a cofounder of the American Association for People with Disabilities and has represented The Arc on several other boards of directors.

The lives of children and adults with intellectual and developmental disabilities and their families improved markedly during his tenure. Paul also served for five years as the Executive Director of The Arc of Northern Rhode Island. He has actively participated in the last 43 national conventions of The Arc. Paul developed The Arc’s Governmental Affairs Seminar, a popular annual event which now has five additional national disability partner groups. He is the recipient of numerous national awards and was named by the National Historic Preservation Trust on Mental Retardation as one of thirty four individuals (twelve survive) who made significant contributions in the 20th century

He often repeated that his greatest achievements included building and maintaining a highly respected policy staff and an ability to explain complicated federal laws and policies in simple terms readily understood by family members and self advocates. We will celebrate these achievements and take the opportunity to send Paul off in style at the closing dinner of Convention on Friday, November 5. Join us at Convention to say goodbye and show your support all that Paul has worked for during his years at The Arc.

The Arc Honors Dr. Charlie Lakin at Convention

E-newsletter Issue Date: Thursday, August 19, 2010

The Arc is proud to announce this year’s Distinguished Research Matters! Award winner, Dr. K Charlie Lakin of the University of Minnesota. Dr. Lakin has over four decades of experience in services to individuals with I/DD as a teacher, researcher, consultant and advocate focusing on quality of life issues. He is the Director of Research and Training Center on Community Living at the University of Minnesota.

The Arc is excited to honor this passionate advocate and skilled researcher who is not only well-known and respected within the I/DD field at large, but also has a long history working alongside The Arc to create better lives for people with disabilities.

“Perhaps no one more than Dr. Lakin has demonstrated through research that the evolving national commitment to community services is well-founded and beneficial to persons with disabilities. It is with great pride that The Arc presents him with this year’s Research Matters! Award,” said Peter V. Berns, CEO of The Arc.

NY State Agency Grapples with ‘the R-word’

E-newsletter Issue Date: Tuesday, June, 22, 2010

A proposal by New York’s Governor David A. Paterson to change the office’s name to the “Developmental Disabilities Services Office” that passed the State Senate was pulled before reaching the Assembly floor. It was the second time in a year, and this move was a surprise given the activism against the term (mental retardation) in the state.

Many of the protestors who blocked the change were people who had fought long and hard to secure the rights of those labeled ‘retarded.’

Of the dozens of states that once used ‘retardation’ in the titles of agencies or departments, only New York and Rhode Island still do. Earlier this month, New York State legislators considered changing the name of the Office of Mental Retardation and Developmental Disabilities.

For some parents, like Henrietta Messier, 85, mother to a daughter with Down syndrome, the 1977 name change was significant. “Mentally retarded meant our children weren’t being lumped together with offices for mental health or alcoholism,” she said.

For others, like David Liscomb, 63, the word ‘retarded’ is limiting. He believes that his right to define himself is paramount. “It really is upsetting to me because it’s not just a word anymore; it’s identifying who I am,” he said. Liscomb, who has developmental disabilities, is a consultant and president of the Self-Advocacy Association of New York. “I want to be identified as a person, and I don’t want the label on buildings and I don’t want the state calling me that.”

One elected official, Assemblyman Peter M. Rivera, who served as chairman of the Mental Health Committee explained advocates supporting the existing terminology. “There was an affinity for the name ‘O.M.R.D.D.’ by some advocates. They felt there was a value to clarifying ‘retardation.’ ‘Developmental disabilities’ was not clarifying who you are talking about,” Rivera said.

The history of the agency’s name ironically has many opponents of the name-change bill defending language they dislike. When the Office of Mental Retardation and Developmental Disabilities was created in 1977, it was a victory for New York’s parents which removed care of their children from the Department of Mental Hygiene.

Chapter Action on the Frontlines

E-newsletter Issue Date: Wednesday April 28, 2010

Fighting the good fight in the struggle to ensure that people with disabilities get their fair share of state funds allocated for supports and services has been exemplified by The Arc of Maryland and The Arc of San Francisco.

The Arc of Maryland, led by Executive Director Cristy Marchand, reports that when the gavel fell on this years’ General Assembly Session that “unlike many other states across the country, Maryland is keeping its promise to our most vulnerable citizens by refusing to cut back on our health care coverage.”

The Maryland General Assembly enacted the False Claims Act of 2010, a piece of collaborative legislation on the part of the Administration, hospitals, providers, and advocates to help the State reclaim funds from the few that choose to take advantage of the Medicaid system and make Medicaid more efficient. The bill coincides with other important health legislation such as the enactment of a law establishing a patient-centered medical home program that provides improved interaction between doctor and patient.

The Arc of San Francisco has moved from the streets of San Francisco to Capitol Hill in advocating for people with intellectual and developmental disabilities by voicing their concerns to elected officials in mid-April after the Disability Policy Seminar in Washington, D.C.

Tim Hornbecker, Chief Executive Officer of The Arc of San Francisco, along with self-advocate Mark Marshall and parents Pat Napoliello (a member of the national board of The Arc), and Jackie Kenley personally met with Sen. Diane Feinstein, Sen. Barbara Boxer and Cong. Jackie Speier. They also met with Speaker Nancy Pelosi’s top aides on Education and Health Care while in Washington.

In California, The Arc of San Francisco was on the frontlines in protesting painful budget cuts that would severely impact people with disabilities. On Capitol Hill, The Arc of San Francisco underscored California Governor Schwarzenegger’s request for more funding and an extension of the enhanced federal share of Medicaid spending (FMAP) or face the elimination of programs such as In Home Support Services, CalWorks and Healthy Families.

The Arc of San Francisco also asked for support from leaders of Congress on the passage of the Direct Support Professional Training Act, which would offer increased training and salaries to Direct Support Professionals. Calling for “Housing Now!” the group addressed the serious housing needs in the San Francisco Bay Area and told legislators that the State should be applying for the new 53,000 Section 8 Housing Vouchers.

The Arc of Connecticut Strikes a Blow for Deinstitutionalization

E-newsletter Issue Date: Friday, February 26, 2010

The Arc of Connecticut’s vigilant long struggle for decent care and community placement for the residents of the Southbury Training School may be close to its final phase. They have been front and center in the U.S. District Court’s 2008 finding that the state violated the statutory and constitutional rights of the residents of the Southbury institution.

The Arc of Connecticut has been a plaintiff in a case spanning over 15 years. The U.S. District Court held hearings in February 2010 as a first step in determining appropriate remedies. Southbury is just one of several institutions in the County in which The Arc is actively involved in their closure and the appropriate relocation of their residents.

Lynn Warner, Executive Director of The Arc of Connecticut said this development “is a real opportunity for the class members still living at Southbury Training School to have all their rights afforded to them – not just some that others choose for them.”

Southbury opened in the 1930’s and is one of the last of its kind in New England – a relic of a time when people with intellectual disabilities were hidden away from mainstream society and forced to live in the shadows of segregation.

The legal battle over Southbury began in the late 1990’s when Former Gov. John G. Rowland refused deinstitutionalization, opting instead to spend millions of dollars to upgrade the institution and bring it into compliance. The 793 residents who lived there at the time were age 45 or older. Today there are 440 remaining Southbury residents, most of whom know no home other than the 1,600-acre campus. Still, experts say, the remaining residents who average age 62, would adapt and benefit from the community rather than institutional living.

The recent hearings for Messier vs. Southbury Training School signals a return to District Judge Ellen Bree Burns’ 2008 ruling that the plaintiffs (Southbury residents, The Arc of Connecticut, WeCAHR and People First) established that the state failed to adequately evaluate residents for placement and later move them into the community. Further, she characterized Southbury as a segregated institution.

A human services consultant stated at the recent hearing in February that the 440 clients presently at Southbury are unnecessarily institutionalized because the state is not taking the proper steps to help with their transition into the community. The consultant also said that Southbury staff needs to be properly educated on community life for people with intellectual disabilities and resources for transition need to be in place.

“They deserve to be fully informed of all the choices that the community has to offer and allowed to make decisions accordingly. It has been a long time coming and we are hopeful through this remedial hearing these rights are fully set in place and the Department of Developmental Services works diligently to make it happen quickly,” Warner says.